Annual cardiology appointment

Yesterday we had Jake’s annual cardiology appointment. It’s turned into a tradition to go on President’s Day since we all have the day off. I generally am in charge of doctor appointments but I don’t like to go to the cardiologist alone.

As usual, Dr. Hougen impresses the heck out of me. He is truly a wonderful doctor. He is unpretentious and has a wonderful bedside manner. He and Jake talk baseball every year and make predictions about the upcoming season.

Since Jake was 2, we’ve gotten the “see you in a year” speech. This year, things were different.

The EEG and the echocardiogram were “normal” for Jake. As with most Tetralogy of Fallot patients, he has leakage in his pulmonary valve. We’ve always been told that its possible he will have to have it replaced someday–and someday may be coming in the next several years. While there was nothing alarming in the echo, Dr. Hougen explained that he needs a cardiac MRI to really get the best look at the valve and the right ventricle. He said that they have really figured out that its really important to be pay attention to that right ventricle.

So, there’s nothing to be concerned about and certainly nothing is imminent. But it’s a reminder that even though Jake lives a normal healthy life, he has some big issues that he will always have to deal with.

It’s important to note that although Jake’s valve is leaky and there is a possibility of future surgeries, it doesn’t mean that his repair surgery wasn’t good. Quite the contrary actually. Dr. Hougen remarks every year that his repair was excellent.

I will say that I am very grateful that there is a generation of adults ahead of Jake who are living with Tetralogy of Fallot. They are paving the way for kids like Jake to live long, healthy lives.

I’ll update after the MRI.

Not my typical Valentine’s Day post

I’m sitting here in front of my computer with about ten things on my mind to write about.  I have to make a choice between posting a random mish mash of these thoughts or focusing on one topic and coming back to the others another time.  The problem is that whenever I do that, I don’t come back to the other stuff.  To spare you from reading a novel, though, I’ll stick to one topic…but to hold myself accountable to the other things, here’ s an abbreviated list of some of the things on my mind today:

  1. Whitney Houston
  2. Facebook observations
  3. Religious Freedom
  4. Changes

They are all timely, but I’ve decided to focus on Valentine’s Day.

If you’ve known me longer than 365 days, you know that I am not a fan of Valentine’s Day.  It’s one of those “holidays” that people either love or hate or love to hate.  Recently, the Oatmeal posted this comic (warning:  colorful language) and I promised not to rant about Valentine’s Day this year.  If you’re curious about my position, you can read my Valentine’s Day – Bah Humbug post here.  And, then this morning, I asked my 12 year old if he would be my Valentine and he said “I don’t celebrate” and went on to parrot all of the things I have said about Valentine’s Day over the years. My first thought was “Oh no…I’ve ruined him”.  My second thought was “Oh no….my future daughter in law is going to hate me”.  Now, she might hate me anyway, but I decided it won’t be about this issue.  I very seriously told him that unless he is lucky enough to find a partner who lets him off the hook at Valentine’s Day, he needs to suck it up.  Sometimes we do things just to make other people happy.

Truth be told, Valentine’s Day is important to me too.  But, for a different reason.  It marks the culmination of Congenital Heart Defect Awareness Week.  CHD Awareness Week is an annual campaign designed to help educate the public about Congenital Heart Defects. The movement was founded in Feb 2000, just a few months after my own son was born with a Congential Heart Defect.  I have had the priviledge of watching the movement grow into an  international coalition of families, individuals, non-profit organizations, support groups, and health professionals who are dedicated to increasing public awareness of Congenital Heart Defects and Childhood Heart Disease.

The fact is that congenital heart defects are common.  In fact, it’s considered by the CDC to be the most common birth defect, affecting nearly 40,000 births in the US every year.  Worldwide, it is a leading cause of birth-defect related deaths.  Despite all this, a relatively small amount of funding is currently available for parent/patient educational services, research, and support. Even more disturbing is that most states do not require newborn screening for some of the most critical heart defects.  The thing is that many times, heart defects will not show signs or symptoms right away.  Without newborn screening and parent education, babies are at a much greater risk of death or disability from their condition than children who are diagnosed within the first 24-48 hours of birth. My own son’s story is a perfect example of how early detection and palliative treatment can save lives.  If he had not been pre-mature, he very likely could have been sent home and we would have had no idea that he had a life threatening condition.

Pulse Oximetry Screening is a simple, non-invasive way to test a the oxygen levels in a baby’s blood.  While this screening does not replace a complete physical examiniation and it does not detect all heart defects, it can alert doctors to a potential problem and the baby can get the additional testing he or she needs.

I am proud to live in a State that has already passed legislation for newborn screening for congenital heart defects.  But, if you don’t live in Maryland, New Jersey or Indiana, it’s possible that babies in your state are not getting this simple test.  If you are pregnant or know somebody who is or might become pregnant, you should care about this.  Since we all probably fall into one of those three categories, we all should care about this.

If you want more information on congenital heart defects or CHD Awareness Week, visit the Congenital Heart Information Network.  These folks have been working hard for years to raise awareness and their website is full of information on CHDs and ways that you can get involved.

CHDs are not something that happen to other people’s kids or people you don’t know.  If you are reading this post you know somebody with a CHD.

And that’s why Valentine’s Day is important to me.  Well, that and less complaining, more sexy rumpus….

Jake has Tetralogy of Fallot.  This picture was taken when he was 3 and full of energy.  It wasn’t always that way, though.  You can read his story by clicking on the picture.

Hope

This morning, there is a family grieving the loss of their infant baby girl. Anna Joy was born with a major heart defect. Just like our son (although not the same defect). She immediately had to endure a surgery that could potentially save her life — until the next surgery. Just like our son. As I have read their blog over the past couple of weeks, I have been overwhelmed by the memories. I know what it’s like to see your baby hooked up to every contraption imagineable. I know what it’s like to watch helplessly as they are wheeled away to surgery. I know what it’s like to be in the hospital during the holidays. I know what it’s like to watch the doctors scratch their heads and declare that there is little more they can do for your baby. I know what it’s like to cry out to God, “Please don’t make me bury an infant”. What I don’t know is what it’s like to come home from the hospital without my baby. It’s times like this that I am overwhelmed with “survivor’s guilt”. I’ve experienced it other times as well as dear friends of mine have lost their children…and each time I wonder why. Why was their child taken and not mine? I remember finding very little comfort in well-meaning Christians telling me that God’s ways are perfect. In fact, it makes me mad. “NO!”, I want to scream. This is not perfect. Death is not perfect. The God I believe in is grieving along with me. This was not how it was meant to be. Creation, as God intended, has been broken.

I’m not saying that God’s ways are not perfect. As Christians, we believe that He works out all things for good (Romans 8:28). But, sometimes we cannot see the good, especially when we are in the midst of heartbreak. I once heard an analogy about a quilt. We see our lives as the front of the quilt, with just the patterns showing. But if we look under the backing, we would see all of the threads and knots that were needed to make the finished product. Still, not much consolation to a grieving parent.

And, then I remember Christmas. The day that we celebrate the birth of God’s son, who was to be the Savior of the world. Jesus was sent to right the wrongs and restore all things to perfection – to the way God intended them to be. To abolish death (2 Timothy 1:10) To give us eternal life so that we would never again have to grieve death (John 3:16).

Does any of this make it easier to grieve the death of a child? Absolutely not. But, it gives us hope. A reminder that there is light in darkness (John 1:15).

Please lift this family up in thought and prayer. Because as a friend put it, in comparison to this, we don’t actually have any problems. Light a candle tonight and say to the darkness, “we beg to differ” (Mary Jo Leddy).

And then listen to this song, written by a friend of ours, about the love, peace and joy that Jesus brings.

Wish you a merry Christmas – Aaron Spiro

Happy Heart Birthday

It has been 11 years since I handed my baby boy over to the nurse in the hospital. It was a hot summer morning in Phoenix and the hallway was bright. I remember he watched me as the nurse took him into the operating room and all I could do was ask Jesus to be with him and comfort him.

It was the first time I had seen my husband cry.

I remember friends and family waiting with us. I remember how tense it was whenever we would get a call with an update. I remember with vivid clarity the nurse who came out to tell us that the surgery was over and they were sewing him up. She was petite with short brown hair and very compassionate eyes.  But, the thing I remember most is an absolute confidence that my baby was going to be okay. I knew it. 

It was touch and go for a few days — and there was a day that I got down on my knees and begged God not to make me bury an infant.  But within a week, he was out of the hospital and we were ready to move on with our life.

Jake’s short life has not been easy, from a medical standpoint.  He’s got more “ologists” than most people I know, young or old.  But, today, the scar is pretty faded and if you didn’t know about his rough start, you probably wouldn’t guess it.  Peronally, I think he is an extra-ordinary child – but I realize I’m a bit biased.  He smiles with his whole body and his enthusiasm is contagious.  He’s vibrant and full of energy.  He’s talented and smart.  He’s compassionate and justice driven.  And, he is funny.  He’s really funny.

It’s not lost on me how blessed we are.  I am thankful for every day that God has given us with Jake.  But, today, I am just thankful that we can have an ordinary day.

Jake – June 5, 2000 just hours before his open heart surgery.